Alice Brouhard, RN and Trainer researches applications and
devices and teaches others to use technology to support their independence and
self-management. That support comes in the form of IPad, Ipod Touch, smartphones
and apps.
While key to learning, self-management is a major component for personal independence. But what happens when a brain injury or other condition
impairs memory or other functions related to self-management and communication?
Alice’s expertise evolved from a very personal level. It
began about twenty-five years ago when her fully normal five year old daughter
was run into by an out-of-control skier on a Colorado ski slope, suffering
diffuse brain injury that required multiple brain surgeries, a
“cranioplasty” to repair her skull, and left her in a two month-long coma.
These injuries rendered her legally blind, with left-side paralysis, and
significant cognitive challenges.
As her daughter approached adulthood, Alice started to look
to help her daughter be independent based on her expressed desire for
independence and the wish to live on her own. In 2005, Alice learned about a
customized computer and software, “Visions for Independent Living” with voice prompts delivered in “a terrible voice.”
Alice recalled: “We had to buy the totally customized
software with timed voice reminders, and picture and audio based task prompting
to guide her through her day. This
software required a dedicated computer (“Lucille”) just for it and an $800.00
touch screen monitor. The total cost for
all of this was around $5000.00., plus the cost of assistance with some of the
initial setup. “
“The next software we bought (after we figured out how to
use Kara’s own voice to record prompts on “Lucille”) was from a company called
Ablelink Technologies. Their system was
called “Voyager.” It provided the same
sort of voice prompts and task prompting that “Visions” provided. The cost for “Voyager” software was greater
than $500.00. “
“We bought the “Voyager” software from Ablelink after Kara’s
initial computer died in 2008. “Visions”
would not run on the Windows 7 computer we had to buy. “Voyager”/Ablelink was
difficult to use initially but I had to learn it out of necessity as Kara was
in her own house by then and LIVED by her computer to be successful and
self-sufficient.”
Over time, Alice worked to design the strategy for a person
affected by a brain tumor. AbleLink was loaded on a PDA, a 2008 purchase. They
adapted the PDA for that person with reminders. Then The Ipod touch came out.
They added an external mic to add the voice prompts, and also utilized Notes
and Calendar a difference for this person who could read.
Then the iPad 1 came out in 2010, the year she bought an
Ipod touch.
Most recently, Alice customized the My Talk app to help a
young man communicate the range of feelings he is feeling as the result of loss
of eyesight and voice from a long-board accident. She has considered how this
application could assist patients who are recovering from strokes and having
language issues.
My Talk had the capacity to provide categories
of feelings with deeper
My Talk also allowed the user to indicate desired activities.
“I started looking at voice recorders for the person who had
had the brain tumor….the IPad had a built in one, but I found easier ones to
use. I started Googling Apps w/ Brain Injuries and started finding apps that
“blew me out of the water.” Then I found a ninety-nine cent app that replaced
the original timed-voice prompts. Then AbleLink came up with a fifty dollar app
that replaced video/picture/audio prompts. Since then I’ve been exploring
another that may replace it at little or now cost.”
During this ongoing conversation, she mentions a stream of
apps, including one called “It’s Done,”—an app which notifies a caregiver when
the supported individual has completed a task.
She researches apps for auditory notifications and text
notifications, since user capacities vary.
The
Touch and Learn—Emotions app can to help a person distinguish and communicate
various emotions. For example, a person listens to the word "unhappy"
and chooses the picture best showing that emotion.
She focuses on scheduling/memory, home safety, daily living skills and
leisure skills in the apps that she identifies, demos, and uses. Her
criteria are for apps that are low cost as possible, ease of set-up, and the
ability to individualize it for the needs of the users. She says that in the
last seven years, the cost of technologies and apps has decreased from that
earlier $5000 price tag to as little as $500.
Aida Reminder allows the individual to create the audio reminders with his or her own voice.
Visual Impact Pro provides voice
and text sequences to support accomplishment of day-to-day tasks.
Throughout this process, Alice has communicated with app developers
and shares that developers have been very responsive and timely to such input.
She also has learned to read the details before updating to understand
capability of an app in an upgrade. (Aida Reminder with Voice is an example
with the IOS6 upgrade.)
Now Alice is providing workshops to Individuals with
disabilities, agencies serving those with disabilities and the aging, OT’s,
PT’s and caretakers. Sessions are hands-on to teach others to research the apps
and put them on Apple products –Iphone, IPad, ITouch.
A key message she brings to her work is that “we all have to
“take time for technology” as it is ubiquitous. To learn to use it is will
allow us to utilize it to our advantage, including the elderly and disabled who
are often characterized as “too old or not capable of utilizing technology.”
Postscripts:
Alice’s daughter now lives in her own house with webcam
technology and her memory supports on an IPad she purchased herself from her
own small business endeavors. Alice’s observation is that her daughter has
internalized some of the prompts, as evidenced by her starting tasks before the
reminders activate.
This discussion has relevance given the number of war
veterans returning from duty with signature brain-injuries: Stats for
War-Related Brain Injury can be viewed at https://www.braintrauma.org/tbi-faqs/military-tbi/.
It also has great relevance to statistical projections for the development of Alzheimers
and dementia in aging populations. Add
to that potential for support for support of Asbergers, and the development of self-management
of young adults in various educational situations.
For those of you who wish to contact Alice Brouhard more
directly on this topic, she can be reached at taketimefortechnology@gmail.com
